Tag Archives: acute spinal cord injury information

The Awkward Entourage

By SPINALpedia Ambassador Antonia Sinibaldi 

Imagine your life is reliant on a single machine that is reliant on a three prong outlet that is attached to an even bulkier power pack, sound good so far? Let’s dive in a bit here..take a moment, close your eyes and picture an unimaginably annoying machine that sounds like an awkward vacuum from the early 90’s, now open your eyes to this awkward long tube of life that is secured by an elastic band that feels like sand paper rubbing against my neck.

If the sand paper feeling rubbing up against your neck didn’t make the hair on your arms stand up, then as always, I like to save the best for last.

To top off the metaphorical cherry on the ice cream sundae, not only is the vent a hefty 30+ pounds but it has has two traveling companions, let me introduce them; thing 1 and thing 2 (queue the musical score from the original cinematic adventure Jaws). Thing 1, being the evil car size battery required to power the vent on the go and last but certainly not least thing 2, where most woman my age have a Louis Vuitton with them at all times, I have this magical cylindrical device known as an oxygen tank which is the perfect addition to every young woman’s entourage.

I am dependent on a ventilator 24 hours a day. Life is difficult for everybody, but being paralyzed from the neck down tends to make things a bit more difficult than usual. The difference between my life and most others is that people can breathe on their own. The ventilator helps me but it is not part of me. Everywhere I go it is on the back of my chair. Ever since I was a little girl I always felt somewhat out of place but with the help of God, he has given me a good life and provided me with purpose.

I have an amazing mother who is my world, my main caretaker, along with family members and nurses. All I have ever known is my injury; I love, I cry, I dance, I sing with my injury. It’s hard to imagine a life without it.

Yes, this vent travels everywhere with me wherever I go but I am not afraid of it and I never let it slow me down. I live life to the fullest. Even though there are moments where I am terrified to be away from “thing 1” a.k.a. the battery bag I never let fear dictate my actions, always pushing ahead. Along with thing 1 and thing 2, my metaphorical Louis Vuitton, I also have an Ambu, “the mascara” that I must keep with me at all times in the off chance that I start arching/spasming.

I can’t pull in the vent when I am spasming so I need the help of Ambu and an oxygen tank.Life is difficult but it is also a lot of fun. I may be on a vent but I sing and go out to see a lot of shows. Musical theater productions are my favorite. I also love going to concerts. No matter where I go and what I do, I know I always need to be careful but that I also have to continue pushing myself and pushing others around me. Regardless of my “condition” there is nothing that will stop me from being who I am.

Free book for Acute SCI: Get Smart Fast, Know Your Rights

In the first ninety-something days after a spinal cord injury, the fear of the unknown and the many unanswered questions running through your head is one of the toughest parts of this time. Doctors, nurses and social workers try to give you as much advice as you can, but paralysis is an ever evolving  world where you need the most up-to-date information. Outside of this initial advice, where do you go to navigate this new world?

This advice is now available thanks to Spinal Cord Injury First 90 Days. This is one of the best free resources available for anybody with a new spinal cord injury. The books are tailored to specific regions of the U.S., the first two being Southern California and the Rocky Mountain states; Arizona and the Midwest States are now in progress, with more books planned for other areas. Fortunately, most of the information is helpful no matter where you live. Not only is it free, it’s an easy read full of a huge amount of information, and it was written by Sam Maddox, who founded New Mobility Magazine and is a legend in the SCI publication world.

Just take a look at what’s in this must-download book:

Diving into the different chapters:

Chapter One: You’re Not Alone focuses on the importance of connecting to others who have been through SCI trauma, the real experts. This is a fantastic topic to enlighten newly-injured folks.

Chapter Two: Emergency Management explains the logistics and procedures of trauma medicine, both at the scene and in the ER. The chapter also covers the various clinical trials a newly injured person might be eligible for.

Chapter Three: SCI basics covers just that – what actually happened to the spinal cord, either by injury, disease or medical error. The chapter also looks at how doctors predict your recovery.

Chapter Four: Choosing a Rehab provides a comprehensive list of specialized care services for people with spinal cord injuries, including important advice on choosing an inpatient rehab. Also listed are the top tier SCI Centers for post-acute care and lifelong rehab.

Chapter Five: Pediatric SCI is strictly for kids with spinal cord injuries; a chapter that deserves its own book. Let’s hope in the future Sam Maddox, the author, gets to write it one day.

Chapter Six: Body and Mind focuses on secondary conditions of SCI life such as psychosocial issues, sexuality and coping tips; all important topics for the newly-injured mind.

Chapter Seven: Caregiving includes info on how caregiving can affect the entire family to give a single family member care, as well as finding caregivers.

Chapter Eight: Getting Mobile talks about going home — ordering supplies and equipment and the best tools you should use as a wheelchair-user. This chapter also covers home modifications.

Chapter Nine: Your legal rights. This chapter explains your civil rights as a person with a disability (and how to choose an attorney if needed). This truly is one of the most important things taught in the book.

Chapter Ten: Research and Recovery asks if a cure for SCI is close? This chapter goes over all of the important research and why hope is on the horizon.

First 90 Days also has a resource section that covers everything from recreation and sports to education and fundraising strategies for people with spinal cord injuries; all topics on life after a spinal cord injury that a person needs to know asap. The internet has provided a platform for people with disabilities that are unlike anything else, and this PDF book hits the literary mark in regards to that, getting must-know information directly to the consumer.

Download your free copy of Spinal Cord Injury First 90 Days here